Difficult day, so I thought I'd write a post just to feel better. It was a normally difficult day. Bob's ability to understand language and gestures is pretty much gone so all of our conversations sound like something out of the Mad Hatter's Tea Party. I've tried to write down some of our conversations because they are so very odd and it keeps me from yelling. B. doesn't understand what I'm saying and keeps saying "What? What? What?'. Which I know isn't his fault but.....I am tired and if I think ahead......Sometimes I wonder what will happen if I just can't do this anymore. And I know that is not an option. But the thing is, I love him and sometimes I see him again just for a moment before he turns back into this person he has become and it breaks my heart. I've been weeping this week so I know he has gotten worse. But this goes on and on and on..and he is so miserable all of the time. I am very very tired and sad..and just needed to tell you all because I know you have the same situation and understand the depth of the problems.

Love you all,

Jill

Costa Rica

37 Replies

I so sorry to hear you are having a difficult time. I will not lie it will continue to be frustrating. I think you do have to think ahead and have a plan otherwise you will always be frustrated. Remember that he is not totally gone and he may feed off your energy. He may be feeling like he is a burden. And know that as crazy as this sounds all these emotions are normal. Make a daily plan with room for flexibility. Include yourself in the plan (ex. After meds I'm taking a shower or before his meal I will have something to eat). Maybe Mondays can be memory Mondays and you tell him stories about your past experience or play light games that will help him stimulate his brain. Tuesdays can be tasty Tuesdays and you can introduce foods he enjoyed to eat (according to the texture and consistency he can tolerate). For example my dad loves chocolate chip cookies. I recently made a batch and my mom soften them up with the the thick milk he drinks. Wednesdays can be comedy day. Gather a list of joke you can share with him throughout the day. He may not laugh the way you experience his laughter but you may get a chuckle or two out. At this point we have to try and work with what we have. Assure him that you are with him every step of the way but there will be times you will need self care. It is very difficult. It is still very difficult for us and we are in year 5 of total care with my dad. Look through pictures, play some music. Not sure if this would be the ideal analogy but it's like you are nourishing a plant or flower. The plant doesn't respond to you physically or verbally but you talk to it, you feed it and you love it. In return the plant grows. The growth for us would be that our loved ones still feel loved. That they continue to be as healthy as this horrible disease allows them to be. That a hug may not be possible but when they squeeze your hand you know that they love you as much as you love them.

Enough of my rambling. Please do take care of yourself and create a plan that will work for both of you.

Bob is now 8 years into this and your ideas are wonderful...But..he is past most of this. Also it doesn't really address the level of pure bad feeling, agitation, misery, confusion, panic, boredom, resentment, frustration, fatigue that he and I share. He is restless and cannot sit. He is continually distressed and nothing except ice cream is a pleasure for him. He is a difficult PSP not at all like his father was and not at all like my father was with his advanced Parkinson's disease. Bob was always a high maintenance husband. Your words are lovely and I might have been able to do these things and in the past I certainly did..it is just that it keeps changing and what energy and enthusiasm and selfless service has pretty much fizzled out these past months. Everything you say is right on but they require a healthy caregiver with that initial enthusiasm that this disease quietly takes away from you.

It is the continual negation of everything I try to do to make him feel better or at least loved... He is a giant pit of negativity and agitation. The best activity for him besides eating ice cream is riding in the car which calms him a bit. I also think my age, 68, and the fact that he is my husband makes the situation different. I cared for his mother and my father and both were easier. The blend of his personality, the disease, our situation, and my over-riding fatigue makes it harder.

I am grateful for your ideas and I will try again today to be more positive. Thank you for the time you took putting your thoughts together. You should save your post..it is a valuable aide and should be posted again,

i am v restlees with this Psp too i know it is difficult to bear when u r iwht the person and v difficult to bEAr hwen u r the PSP person too!

and (the anger frustration boredom et c etc) all at the negative emotions we have as people or carer WITH thIS PSP amok it v difffulcut to do anything positive together any more

i am fine when i a m with others who are more understandign as they do not have to live with me 24/7and it si easy to say well doen keep com gin to the tai chi group or choir or whatever bty ny partner juis stays in when i am out btu doe snt want to take part in these things at all . HE si changing a bit and will now accompany em to choir rehearsals in a wheelchair for my own and others safety to tha ti can continue to sing alogn and keep my timgn ok, i hope, 4 another few months a least

Sometimes I think the restlessness is a side effect of the medications. It is one of the most common side effects of just about every drug but tends to go unnoticed because doctors write it off as "emotional" or small price to pay for the benefits of the medication etc. I've wanted to mention it to Bob's neurologist but he only speaks Spanish (although I think he does speak English but is embarrassed to sound less than perfect.) and hates when I have anything smarty-pants to say. This is a difficult country to deal with doctors in. They are used to being the little prince and God forbid a WOMAN should challenge or even contribute to the treatment discussion.

But if you are brave...check out your med side effects and if you find out anything let me know. The restlessness is a torture. I had it with several medications and I refused to take them...very common meds too.

I am sorry if I in anyway I offended you...it was thoughtless of me and I am so sorry if it read badly,

God, Jill .. don't know how you cope.. I am about to get up to face the day and Sabdra's needs ..which have not yet got to the stage you are at. Reading your posting has given me the support I need to leap ( well not exactly' leap' .. Limp

Is more accurate) into action. Onward and upward. God Bless you and all of us Graham (Hampshire UK)

Oh Jill, I had a shitty day as well. There I said it. And I have been sobbing too. I wonder the same things as you do. One minute he is who he used to be and the next minute he is rainman. I cannot understand much of what he says these days and he gets so frustrated and incredibly angry when I don't. I thought we were through the angry violent stage and it has once again reared its angry head. I actually yelled back at him today to stop yelling like a wounded animal. And when he latched on to my wrists it took all of my willpower not to lash back. Then I bathed him to calm him down and tucked him in to read to him and I think to myself,"no one has a clue how hard this is..."

we could sob together...this is such a lonely disease. That is the most terrible part of it. The violence is not tolerable. And yelling back in the face of violence is more than appropriate..it gets their attention. Sometimes they don't know that they are hurting you. I have even said very very firmly "Listen old man, you better be very very nice to me because you NEED me." That does seem to get his attention.

Oh Jill So Sorry but just keep doing your best.I asked mine what his girls could get him for Christmas,Sounded like dreadlocks but after several minutes of frustration for us both it was bedsocks,but a few years back that was equally as unlikely as dreadlocks!He has asked for toast and marmite and got marmalade.He has now asked for a new fountain pen to improve his writing, we will try it but I am not too hopeful.Keep writing we all need one another,Love Px

Yes Jill, we do understand the depths of the problem but some of us are fortunate to have more support than others so it must make life a bit more tolerable; I include myself as one of the fortunate ones. My husband repeats the word, "What" a lot, but it is always when I have asked him a question...what would you like to eat/drink/wear/watching TV. He will always try to repeat what I have said. Now I usually take food to him on a tray eg. A packet of cheese, chicken piece, box of eggs. He will point to the one he wants. I'll also show him two pairs of trousers, two jumpers etc so he can choose what to wear. If I say, "Which one" he will try to repeat what I have said.

Do you manage to get out of the house together. I know it can be a huge effort and I am usually exhausted by the time I get anywhere but it does cheer me up to see other people and chat about things other than PSP.

Unfortunately things won't get much better but strategies to help cope with everyday problems can make life more tolerable for us all. Jessica had some good ideas and I like the plant analogy.

We all feel sad and tired at times but I hope by voicing your feelings it has made you feel a bit better.

As usual your words are gladly received and your ideas reflect your patience and kindness. Seeing other people is always worth the trouble, you are right, it is so easy for me to fall into a kind of paralysis and forget that I have options. His negativity can stop me in my tracks but it is not good for either of us. Another day and another chance to pay attention to the small joys. Like coffee!

I'm so sorry to read about your life. It is horrendous. Chris is not at the stage you describe but I know there are times when I just have to detach myself physically in order to get it in perspective. We try to separate Chris and P.S.P. and direct the anger to P.S.P. Not always successful ! My fear is when Chris is completely" gone" and I am left with P.S.P. whether I will cope. My thoughts are with you today. Jean

You are right..it is important to keep trying to separate the person from the disease. I must hold on to the love I feel and realize today that it is the disease I have fallen out of love with. Thank you for your support..it helps a lot,

Sorry but I sobbed because I know what I will lose. Brians speach gets worse as the day goes on but every morning I get a smile and he says hello beautiful. Chin up one and all and hold onto the good things. Think I will have to video his morning greeting so when he is unable to say it I can then play it. Janexx

Good idea filming the greeting Jane. Colin rarely says anything now. When I kiss him at night I always tell him I love him and he would reply,"I love you more". Now he just lies there with his eyes shut, no response at all. A few night ago I did ask him if he still loved me more and he grunted. I said I'm taking that as a yes and he laughed. Inside he is still the same lovely man I married 42 years ago. X

Hi Jill, it's a shame you live so far away, you and me (plus countless others) need to get out, enjoy and glass of wine and share a huge box of tissues. I really don't know what to say, without breaking down myself, cried enough this week!

You know we all understand, the tiredness and loneliness of this evil disease just can't not be put into adequate words, well I haven't got them. S and I went out to the pub for dinner last night. He sat there with his eyes shut. I asked him not to do that, saying it was lonely enough, sat there with him not talking, without him switching off completely. He replied with a meaningful "yes" so I think he understood. I know he is still in there, it's just harder and harder to find these days!

I too, worry about coping, what will I do when I get to this and that stage, knowing how I am struggling now. Life is changing again for us, S has been stable for a while now, but I am well aware that the disease is marching on. We are going to have to do something about his mobility soon, either a walker or a decent wheelchair. That's going to bring in a whole new set of problems. If only there was some sort of time scale, so you could at least plan, not just lurch from from one crisis to another. It's this dreadful knowledge, that today, he could fall and not get up, or go on getting worse for the next 10 years! Neither bears thinking about!

I thought Jessica's reply was a brilliant idea, whether I am capable of doing it is another matter. It takes time and effort, which at the moment, I seem to have run out of!!!

We are back to cold, dark, damp England next week, lots of packing up to do! Again, all by myself, but then, that's nothing new, can't remember him ever helping before this crap started!!! That's another problem, I can't remember, what life was before PSP, if there ever was one. Hindsight has taken a lot of my life and changed its history. My first husband admitted to lots of different things when we spilt, so that part of my life was a lie, now. PSP has taken the second part and changed how I thought about certain aspects.

Now all I have to look forward to is a very lonely old age. What a waste!

Listen..no lonely old age...more parties, more loves, more freedom than ever before, more wisdom, and we will all be able to travel and see each other...and eat whatever we want..and sleep all night...and think only about ourselves. I know there is a future and I am counting on it. I know what I am doing is important now and I know I am learning about life and reality...but I also know this is not the end of me. That his life is moving away that my life will continue without him and that is a mystery. Right now is terribly hard and lonely. I am glad I have all of you to talk with. This morning I know we will all come through.

There will be life after PSP. The sad thing is it won't be with our loved ones who have it. Once a month I meet up with 7 women, the oldest is 80 and I am the youngest at 63. All the others are widows. They nursed their husbands through cancer, motor neurone disease, Altzheimers and one didn't have time to say goodbye as her husband had a stroke which killed him suddenly when he was in his 50s. We are supposed to be a wine appreciation group and boy do we appreciate the wine. By the end of the evening we are usually crying with laughter. The others are all going to Italy together next year. Before this 3 of them went on holiday alone as they said they didn't have anyone to go with and although their husbands had died, they were still very much alive and had no intention of wasting whatever time they have left. Please don't give up on yourself Heady. I'm sure everything we are all going through is making us stronger and you are doing everything now that you would have to do if you were alone; and PLEASE try and bring some of that sunshine back here to cold, damp, England.

Oh no! Just another thing you have got to do. I quite appreciate you don't believe a word at the moment and sometimes I have a job to believe it as well, but then I see how my friends have got through similar situations and hope my future is as positive as theirs.

I hope your journey home is good and not too stressful. I have decided I can't go away with Colin again. We went twice this year to places that were fully equipped with everything we needed, more than we have here and once there we had a lovely time, not a rest of course but good. It was the packing, unpacking, driving there etc that I am not putting myself through again. I hope once you are home and the cases are unpacked, washing done etc, you can feel more relaxed; but then there are Christmas cards to write, presents to buy......always something x

I think I just lost my reply to you. Anyhow, here it is again if I did lose it. My husband has PSP, although it certainly has features of both Parkinson's and Alzheimer's but clearly is PSP. His father died from PSP at 73 and now they seem to believe that it can be inherited. His mother had Alzheimer's Disease as did both sets of grandparents. Great bodies, bad brains.

Jill

Costa Rica

I was just going to ask my husband what "proveritate" means (he's the Latin scholar and then I remembered he can't remember anymore. He was a scholar/ academic and now.....

Jill, This is a difficult time for you and my heart goes out to you. I can tell you are a very strong and compassionate woman. It always breaks my heart to read of a woman whose husband has PSP. I know, as a man, how difficult it was for me and can't imagine how women deal with PSP. If I were closer I'd give you a huge hug and comfort you as much as possible (my shoulder is soft LOL). Just keep telling yourself "I can do this!". Each day put the past behind and look for some little bright or light spot in the day. Sending extra good thoughts your way today. (((((HUGS))))) JImbo

YOU are havign a v difficult time hav ignnursefd your min law fin law and now your husband iwht this PSP

IT DOES not matter that you are worn out with it all 0- he msut be too - i speak fm one who has this PSP and it does not gvie up for an instant int he night time or day time ever - i knwo this does not help you but try and remember the man he was b4 this PSP struck him - eh is in his 8ht year you say - so he has survive da lot so far..

Thank you love for the hugs..they are gladly received as is your reminder of how it feels to be the one suffering from PSP. I think at times I have to put a wall up to protect myself from the horror of what he is feeling. It is too hard to tolerate his pain and be so helpless to make him happy. I've tried so hard to make it better for him somehow and it hurts so to watch him suffer. I wish I could do something to make him happy even a tiny bit. I feel I have tried everything I know how to do..and I have a huge bag of tricks..but the only thing so far is ice cream...so we have lots and lots of ice cream.

Don't despair- with you all the way and totally understand . Try something out of the box its helped me - tell us all about your house and what it is like where you live and what your neighbours are like- it just takes you out of yourself for a while and I am incredibly nosey and I have never been to Costa Rica . Georgepa

My experience of caring for a loved one with PSP ended 5 years ago but still recall that feeling of overwhelming tiredness you describe, and thinking if only I could get a full nights sleep I could cope with it all. Fortunately seeking cover for just one night a week got me into a system I didn't know existed and, like NannaB, received tremendous professional help. My only purpose in sending this post is to encourage you to take care of yourself for the sake of your loved one and explore every avenue for assistance, to the point of being a nuisance if necessary, so that you can get the rest you need. There are limits to human endurance, sleep deprivation is used to break peoples spirit and it won't help anyone if you are no longer able to cope. If there is no official help available it must be tremendously difficult, but you must get sleep one way or another. If having exhausted all channels of help such as friends, family and hired, I can think of no alternative to that of making the person cared for comfortable and secure, explaining your need for rest and simply resting, irrespective of the time of day.

What you are doing is remarkable, and retaining a sense of humour essential, I just wish I could be of some practical use.

Thank you so very much for the time you took to write to me. You are correct I must rest. I have hired a lovely man to be here at night-time and be there if I need him for emergencies and sleep time. he is good with Bob and I am much more comfortable knowing I have help right here when Bob falls which is impossible for me to move him without help. Also he is a calming influence on my rather excitable nature. He is a farmer and father of 3 and seems to know when something requires a doctor and when something is not really serious just bloody.

It is hard not to feel guilty sometimes if I am free for an hour or two. But it seems that he is fine without me now. You are right though it is necessary. I know my own health has really slipped over the past 8 years..(also aging double time.)